Cold Caps Users Past and Present, to Save Hair
Comments
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That's great Aimless. I washed my hair also and same shedding as before. I hope my shedding at least slows down soon. My eyebrows are growing out whichs good. At least it'll bring some color to my face and frame it. This cotton candy hair is hopeless.
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Willa, I am curious about root touch ups also. After I finally wash my hair I hate putting that nasty powdered stuff on. It makes it immediately feel dirty. My hairdresser is looking into vegetable color with no chemicals. Good news my hair is still on my head but the roots are 2" long, ugh
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Hi, I'm 5 months PFC. Just wanted to encourage you all let you know that I did very good capping. I'd say I lost about 30/40% of my hair. Mostly at crown, part, above ears and sides. My biggest shed was after 2ed infusion and then about 4 weeks after. I would say I actually lost more hair after I was done with chemo than I did during the whole process. I was starting to get so upset and discouraged but then one day it just stopped. My hair of course was a lot thinner and dryer plus all the grey was showing. I colored and trimmed my hair at about 8 weeks post and it immediately booked a lot better. Now all the new growth has filled in and the thickness is coming back. My hair looks much much better. During chemo I used Topix and root concealer and I did use it during infusion time and had no problems at all. I'll post a picture soon. Have a good day!!!
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Lemint: Thank you for the encouraging info! So glad you feel good about your hair - hoping your body and spirit are feeling great too.
Do you recall if you used Madison Reed concealer? I think someone (Viktory, maybe) mentioned that Artic said that one was ok but I didn't know if it was ok during chemo itself. It's paraben and sulfate free. I'm trying to avoid use if possible, but we'll see...
Again, thank you so much. All the best wishes to you.
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Lemint, Thankyou for your encourament. It's infusion day for me. Which cap company did you use? I'd like to use it during infusion I have a very large bald spot in top. I hve Toppik but never looked at ingredients. Hope it's ok.
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Willa~ I used madison reed concealer as my grays were growing out, during and after. Now I use both MR and toppik.
Unfortunately, I am still shedding heavy 16 weeks post final chemo, I am down to about 30% of my original amount. Getting a second hair cut tomorrow, probably take another 2-3 inches off(I started with hair down to my breasts). the length + the crazy thinness is making my hair look even stringier, I think. Also, taking my topper in with me to have my stylist work on it as well since I haven't quite made it work yet. Still feeling VERY self conscious/not me in it.
Sounds(and looks) like several of you have been very successful! I am so happy for you! for those of you that were less successful, I feel ya! sending hugs.
Still very happy that I have been able to walk around since April without a ton of hats, wigs, scarves, etc. been getting by with toppik and the constant letting go of expectations.
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Willa and Meow, I used Artic Cold Caps. The root concealer was called Style Edit, it's a spray and I got it on Amazon. I did use the topix also. I'm feeling stronger every day. I'm having reconstruction surgery on October 18th so a little nervous about that but excited.
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ACC recommended Madison Reed for grey . When I did search on Amazon the other product came out ( see picture) and I purchased it without realizing it's not MReed. Only after I used it a few times I realized it was different brand. but that's what I use for my grey. ACC said it's ok to use MReed trough chemo but I waited till I was over with it. Strange but I didn't have many grey during chemo. Now there much more coming out.
Is it ok to go to salon and color hair after 8 weeks of chemo? I will be 7 weeks on Tuesday. Should I use only organic color?
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A lot of us cap "old-timers" used Colormark root concealer to cover the grey. You sort of paint it on, works really well but it does wash out. You can get it at Ulta and probably Amazon.
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are we suppose to leave our hair alone right after capping or comb thru? Anyone know the protocol
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I don't think it matters if you comb through your hair post capping. I combed through both before and after capping to minimize tangling.
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does anybody regret doing chemo? I thought this was all about the hair loss. I sailed pretty well through chemo but here I am, over 3 months PFC and I'm still take Percocet several times a day because I have severe, diffuse tendon and joint pain. I took some steroids 3 weeks ago for something else and realized it made all my pain go away. So I decided hurray! I can finally start weaning of the Percocet. But no. 4 days later the pain all came rIght back. So that means I'm extremely inflamed since steroids made it better. I felt 90% back to my old self. Now I'm back to about 30% except for my hair which looks amazing! Had a full rheumatoid panel done that was negative but my oncologist is still concerned I have taxotere induced Autoimmune disease so I'm waiting to see a rheumatologist. Its rare, but a known complication. I could just cry. Between this, the probable loss of fertility, and feeling like a puffy, version of my old self, I would have rethought this. She says I still might get my periods back but I might not. It's been 3 months since my last lupron shot should have worn off. All my labs still say I'm in menopause even though my symptoms are mostly gone.
I started tamoxifen today. I told her I'll give it 6 months and if I can't stand my quality of life, I'm done. It may not be what she wants to hear, but at least I'm honest. I can't wake up every night drenched in sweat and not getting sleep and be expected to keep people alive during surgery. They deserve better from me. I put up with it during chemo because I took lupron shots to induce menopause before my ovaries could get damaged from the cytoxan. But that was temporary.
And to top off my bad news, a dear friend of mine committed suicide last Thursday night. He was a surgeon I used to work with and we kept in touch after I changed hospitals. He was very supportive of my diagnosis and 3 days before shooting himself, he wrote me a short message telling me how much he admired my strength. Looking back, I think he was saying goodbye. I wrote him back and said what he sees on Facebook doesn't even begin to tell my story because this has been the worst year of my life. He could have talked to me about what was wrong. I would have understood. I'm so hurt and angry at him. Here I am, bearing the burden of a cancer diagnosis, fighting hard to keep my life and he takes his! So it's been a terrible week. I just want things to be like they were before I found out I had cancer. I could still dream of having a baby, I wasn't living on Percocet for debilitating pain, and my friend was still alive. Everything was different then. I knew cancer would change my life but not this bad.
And now my mood is all crazy because I'm back on steroids. As much as I hate them, I asked for them because I need some relief. Maybe this round will get rid of the inflammation and it won't come back. I hope so. I've never heard of taxotere causing lupus but my doctor said she has had patients already diagnosed with it have severe flares after taxotere and of others who it develops inafter they receive it. God I hope I'm not one of them. Haven't I been through enough already?
Anyone else having an overall shitty week?
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meow, I waited until my hair thawed out and heated up some before I combed it after capping. I would often still have ice in it right after. I didn't want to break it. I sure don't miss that dry, crispy troll hair phaila so eloquently named it.
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Runner70, I am so sorry for your loss. It brought tears to my eyes. It happening at the lowest part of your life is heart breaking. Words just don't cut it. I know. Maybe he had shame or didn't hve the tools to communicate for help. Don't blame yourself and you do hve the right to be angry it's part of the stages of grief. Sorry too that you wanted children hopefully there's a chance somewhere. Maybe see a specialist that does that kind of help for chemo patients. I would do everything I could so not to hve regret. I hve 2 beautiful girls and always dreamed of a son. I grew up w 2 older bros and always felt a deep want for one. My obgyn at the time told me not hve anymore bc I didn't heal well after 2 c sections. It crushed me but I tried 2 yrs later switched dr ( bc she took out staples too soon ) and got my son! Looked into ovulation to insure Male conception. I knw your situation is different but when your up for it maybe look into it.
I pray that there's no lupus down the road!! My nite sweats are getting worse and I have 1 more infusion. I can't sleep either and help my kids w school. I feel guilty. I have ice pak or wet cloth by me. I put one on forehead or back of neck to cool me down. It helps alittle. If your are severe tell your dr. That's not normal on my paperwork.
Your pain issue might stem from being overly active. My obgyn that had chemo 10 yrs ago told me not to be hard on the joints and bones. No jumping , etc.
I want you knw that you being in such a noble profession is such an accomplishment. I admire you for following your dream. One day at a time and soon this pain will lessen. Lots of hugs to you sweetie. Ps thanks on the hair reply
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Runner: Please hang on. You are dealing with a shit-ton of pain on your plate. I am beyond sorry for all your are going through. Anyone would be almost over the edge with just one of the things you are dealing with now. The longer I live the more I think that when one really bad thing happens to a person a holy hell storm of other bad things hits them until it seems they will break into a million pieces. But they don't. And it's kind of a miracle.
I wish I had something perfect to say to comfort you. You have been through so much.
As far as regretting chemo, I'm not far along yet but I worry every day about what's to come. I had a conversation with my MO last week because when I saw her I was ill from SEs, trying not to throw up on her and having trouble literally knowing my own name. My brain was just gone - I felt like I had a lobotomy At my next appt I asked her if people have permanent chemo brain and she said she sees it in some of her patients. She says she doesn't know if it is chemo brain per se but just that cancer changes the way a person relates to their body and to the way their brain processes input - that it's really hard to tease out what the mind does with the trauma of cancer. All this to say that maybe there is a lot to the body-mind-spirit connection that we don't truly understand. If it can be broken maybe it can be healed. Maybe your inflammation isn't lupus, maybe it's just your body being reactive to so much trauma, so many chemicals and months of severe stress. Maybe you just need more time to recover.
If you didn't have chemo you maybe wouldn't have all this joint and tendon pain, or the possible fertility issues. But later on if you got mets, what then? We can't live in two places at once - the having done chemo and not have done chemo. We can't know absolutely which one is right. It's a shitty place of endless uncertainty. I can torture myself with this even though I have a really high risk cancer.
I'm so sad for you and the loss of your friend. The whole thing just makes me cry - people trying so hard to hang on to their lives and others wanting so much to let go. I hope you will be okay as time goes on and that you will have some help in processing such a tremendous loss and everything that goes with it.
One of my wiser friends tonight said " Remember, the moon is not always full". Initially I was kind of annoyed but after I took some breaths I thought maybe it is a little bit helpful to remember that.. . that tomorrow will look different from today and the day after that and then the day after that. I don't know. I hope that in some of these coming days your moon is full and bright and shines some joy on you.
I wish you sweet softness of peace.
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Viktoryak, Lemint, Wildflower, Sarahrae, Runner and JC254 - thank you guys for all the hair tips. So helpful. Now if I can just make it through the actual infusions...
Meow - I hope your infusion (this week, right?) went well and you're feel good.
KD - continued good thoughts your way on your surgery..
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Runner, I am so sorry to hear what you are going through. Your joint pain sounds awful, and for someone so active and so determined, must be all the more frustrating. I suppose it is good to know that the steroids settled it down, and hopefully you'll have some relief at a manageable dose?
As for your friend, again, I am so sorry, for your loss, and the loss of his life. Suicide is such a beastly thing, impossible to comprehend, especially when you are fighting for your own life.
On chemo, I agree with what Willa has said, you just can't walk both paths at once. My initial plan did not include chemo, and then we had a choice to make. I could not imagine looking back if it recurred and wishing I had done it. I wanted to hit this damned cancer with everything in the arsenal.
It is so unfortunate that you have had the side effects you have. It is amazing how some people seem to sail through with ease, and others don't, with no apparent rhyme or reason. My brain is dull and I am stiff and creaky like an old lady, but I expect it will get better.
Hoping for better days for you ahead.
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I am on NJ transit bus commuting to City to work and crying over Runners post and other ladies words of wisdom. Thanks g..d for dark sunglasses that cover my face. I am not good person to motivate or encourage people. I just want to say I am so sorry and I really hope it will be a day when we all will be hapier, healthier and not afraid of reoccurance...or even better the cure for cancer will be finally discovered.
I also keep having these horrible night sweats trough chemo and now. I keep wet sport towel next to my bed and it helps to wipe the sweat out... If not for sweat , I get chills...it's crazy...sweats, chills...etc. Not much sleep for me...
As for pain..I am also active but since after chemo 8 or so I feel like old lady..it's an issue to sit on toilet.lol. I have to drop my whole body. And today, I was running to the bus( late ) and my legs hurt to run...( I usually do spin or weight classes in gym..I only ran while at first 6 chemos then stopped ). So, when I was running to the bus, I was thinking about you Runner and thinking about posting a question if you have pain when run...well but your post was already here when I loged in.
Talking about hot flashes. ..just had one out of blue ...undressing my sweater...lol..
I also didn't have periods since first chemo and my MO tells me I still might get them ...( hope not..) . he didn't put me yet on tamoxifen .it is in store for me after rads. I am done with 8.12 more to go.
As for chemo brain, what I noticed I became cloumsy and forget staff. My husband calls me Cloumsy now. or Shlemazel is a Jewish name for it...I drop and spill things constantly. Another day I just overturned my salad dish all over myself at wrk. Can you imagine all tomatoes, cucumbers, oil etc all over my outfit!! Good thing I had black on, so I washed it and it was not noticable so much..I just hope a piece of salmon from salad I was eating not hiding somewhere under my desk...Last thing I need smelly work place:)
. And I do still cry a lot about my cancer and yes,I wish for my cancer free life that I had before.
Girls, thank you for beeing here and your support.🌹😘
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Willa, thank you for your well wishes. My surgery went well, and I'm feeling ok, sore and some pain. The only thing that hurts the most is the drain, and I had nausea last night. However, thinking that the expander is out of my body is such a great feeling.
Runner - so very sorry for your loss. I regret having done chemo everyday, even though I know logically it was the right decision for me. I've lost so much hair, look 20 years older, have lost all my muscles (used to work out and was in a good shape before cancer), my butt is gone, and on and on. With all these changes I do not recognize myself in the mirror anymore. It makes me cry all the time. However,We just have to move forward and time will heal.
On the subject of children; I love kids, but when I got married 22 years ago, my husband and I decided not to have any. I thought when I get older I'll regret my decision. Here I am years later and we are happily married and no kids and regrets. What I'm trying to say is that you can still have a fulfilled life with or without children. We have other friends in the same situation as us and all happy. Who knows, with modern medicine you may well have a bunch of kids in the future.
Wishing everyone a peaceful and nice long weekend
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Viktoryak- As a fellow NJ Transit bus rider commuting into the city I can so commiserate with you and your last post.!!!! Not sure if you are also on the North Young Cancer Network FB page it is really helpful.
Runner- Wow I feel the same way. The fertility component is really the "kicker for me". Know that your friend is watching you and is lending is strength to you so that you can find it to fight this disease and live and someday have children!! Like viktoryak I cry everyday and feel so cheated. My first chemo is this upcoming week and Dr's wont allow me time to do one more egg harvest cycle and I am beyond bereft but I know it is in the interest of trying to save my life. I am so sorry for your pain and when it rains it pours with the "road bumps of life'. I had a miscarriage, lost my job, and was diagnosed with BC all in 2016 so I get it. You are probably saying "Why me???".
As this is a cold cap thread I just ordered mine from arctic cold caps. I am doing the TCHP protocol. Next step is looking into the hand and feet mitts for neuropathy or at the very least ice baths....
What is such a tragicomedy about this situation is my "boobs" and hair are my best features lol. It's so not funny makes you just laugh.
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Dear mnichols, Welcome to the community. We are sorry for your diagnosis. What an incredible amount of loss in one year. We are so glad that you reached out here. We look forward to learning more about you and your story and seeing you here and around the boards. Keep us posted. The Mods
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McNichols and Runner's and others' posts remind us - that although we're all on this forum to share successes and failures and helpful hints about cold capping - it's a distraction from the subject at hand. The subject being the cancer that came into our lives uninvited and left us changed. Occasionally the reality seeps in and we are the ones who are there to understand. Today was the funeral of a friend and colleague who died of metastatic breast cancer. (I was hired to do her job when she was too ill to return to work two years ago).She lived life to its fullest every single day - she never showed her cracks. She inspired all who knew her - when she was well, and especially when she was sick. But I couldn't bring myself to attend the funeral. Just having finished treatment this week - and knowing how many people would be seeing me - with my "cancer hair" I just couldn't do it. I pay my respects to her family privately. So, as I bemoan the look of my hair - I really have my eyes on what's important - and Runner and McNichols and all of us - I pray for strength.
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Hi ladies,
I hope everyone had a good cancer thoughts free weekend.
Aimless, this and some other cancer stories I hear every day very sad. That's why I try not to think about our real issue- cancer but concentrate on looks and hair.
I am 7 weeks pfc today, and today I had a haircut. First time in a long time I let my hairdresser use normal comb.My hairdresser told me there only one place my hair got a bit thin is on the top of the head.Now I am thinking about buying some organic color and coloring my hair. Anyone was a bad girl and didn't follow protocol and colored hair earlier then 3 month?
Here is a picture off top
of my head ,I took today while doing herceptin.
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Wow, that's a lot of hair! Hope I do as well, just started "shedding" last week (week 4) and wish it would stop. Shedding evenly all over and still have full head of hair but freaking me out. I am on adriamycin which is hell on hair, one more and go on taxol. Hope slows down then. I am hoping to use an organic color, maybe soon. The gray roots make me look balding. Let me know if you hear of a good one.
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jiffrig, I am not a doctor, but I am just wondering, if you are stage 0 why would they put you on AC as well as Taxol. I think I still have a lot of hair because I only had Taxol. AC more harsh on hair.
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I'm stage llA, not sure why my profile said zero. I have one lymph node involved so they threw everything at me...lucky me! 🙄
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Viktory, looking good! I colored at 7 weeks PFC, and again 4 weeks after that, with a temporary color. Then after another 4 weeks went back to my salon's regular color product. The temporary color was Clairol Beautiful and I don't recommend it. It helped, but turned greenish as it washed out.
Jiffrig, I would definitely NOT color while you're doing chemo!
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Paton, thanks for the advise. I know you are right, I just hate to wash my hair and then have to put that nasty colored powder on to cover roots. It works, but immediately makes it feel dirty! Ugh
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Patin, I was thinking not temporary color. Btw, what is temporary? I never used it.This is the product I bought yesterday. Anyone used something like this before suggested 3 month off? I am itching to use it today, but scared it will make my hair to start shedding ...
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Viktoryak, please post if it works...when did you get a haircut? I am 6 weeks out today and now understand the troll hair...
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